Leflunomide and tapering. Update on flare this Summer

[PastelsinArt]

I posted in late July about getting into a yo-yo situation trying to control a flare of PMR and got excellent advice from DL which sorted it out. I've been on 3.5mg ever since (I was at 2mg when the flare started). I've tried using DSNS taper. But the PMR isn't ready to cooperate yet!On Monday I had to cancel my rheumy appointment at point blank notice as I got Covid. However during the morning Dr Mackie rang to find out why I hadn't come. How's that for service?! So after all I had a consultation over the phone. The result (as well as really boosting my mood, the meetings with her are so valuable) is that I am to increase the Leflunomide back to 20mg once I'm fully recovered from covid. I'd not connected the reduction from 20mg to 10mg Lef with the flare as it's a delayed response, but looking back I can see the pattern.

Let's hope I can get back to a successful DSNS tapering routine as soon as I've said goodbye to Covid. I think I picked it up at Catania airport coming home from Sicily btw - so crowded and a delayed flight so stuck there for a couple of hours.

Thanks for listening, and for the help in the Summer.

[PMRpro Ambassador]

Hard luck - really I think going back to masks is a really good idea and I have to say, flying doesn't really appeal!

It takes months at least for Leflunomide levels in the body to drop - most confusing.

[DorsetLady PMRGCAuk volunteer]

Thanks for update, and yes brilliant from SM, as has been said many times, wish there were more like her…

… sorry to hear about Covid, but as we know it’s still making its mark, hope you soon recover.... and don’t be in any rush to restart taper.

[krillemy]

Hi, so nice with good doctors! May I ask about the Leflunomide? has it been working for you, how long before it worked, and do you have side effects?

[PastelsinArt in reply to krillemy]

The Leflunomide is slow to have an effect on the PMR and the reaction after reducing from 20mg to 10mg was 2-3 months too. I think this is why I failed to make the connection that this was the reason for the flare I had in the Summer.I've tolerated it quite well without problems. There's a warning on the packaging not to drink alcohol, but my blood tests are fine with only about 8-10 units a week. It can give you diarrhoea, which should settle down after a while. It does affect my bowels, but only first thing in the morning, so that's ok. Once I'm back on 20mg I hope to start extremely slow DSNS tapering again.

[krillemy in reply to PastelsinArt]

Thank you! Sounds like there are grounds for trying Leflunomide if MtX fails for me. I tolerate MtX well, and maybe I am seeing some improvement now 6 weeks in and reaching 15 mg weekly, but my doctor mentioned Leflunomide as the next drug we could try to help me reduce pred. You are very low in pred. that is impressing